Frequently Asked Questions

When treating heart failure, we pay close attention to patients. If they have even the smallest changes, we adjust their treatment right away. We provide the most advanced heart failure therapies available. Heart medications are often the first treatment. Early use can improve the heart’s function and possibly delay or prevent the need for heart transplant. If symptoms don’t go away or, we use mechanical support devices, such as pacemakers and ventricular assist devices (VAD), to help the heart function better.

Anyone considered for transplant will have an extensive evaluation by the heart transplant team. Evaluation and testing can take 2-3 days. This includes:

• Cardiac Catheterization: used to evaluate the function and anatomy of the heart. Also looks at the blood pressures in the chambers of the heart and the blood pressure of the lung arteries.

• Echocardiogram (ECHO): an ultrasound of the heart that measures the size, anatomy and function of the heart.

• Electrocardiogram (EKG): shows the heart rhythm and heart rate.

• Chest X-ray: an X-ray image of heart and lungs

• Blood Tests: blood will be drawn to check the function of the kidneys, thyroid, pancreas, liver, immune system and blood type

• Dental Evaluation: check for any dental cavities

• Nutrition Evaluation: provides support in making healthy diet choices

• Social Work Evaluation: identifies needs and social support system

We work closely with your cardiologist to see if a heart transplant is needed. When needed, the patient receives a complete evaluation from our team of specialists. Our evaluation may result in placing your child on the waitlist or continuing conventional treatments, whichever is best for your child. Read more about the process here.

If our team decides a transplant is needed, we will discuss it with the patient and their family. If everyone decides to go ahead with the transplant, we’ll place the patient on the UNOS list. UNOS oversees the national organ-matching process between patients and donors.

We are here to help patients and families every step of the way through the transplant process. We understand that a heart transplant can upend a family’s life. They require adjustments with work and school for medical visits. You need to be close by when we get the call that we have a heart for your child. We have a team of transplant coordinators who help you understand the medical steps of the process. They also team up with transplant-trained social workers and psychologists to support the entire family emotionally and logistically. This includes helping you secure lodging, transportation, and more.

There are over 250 transplant centers in the United States. Each center is fully accredited by the United Network for Organ Sharing (UNOS).

Many factors should be considered including:

• Access: Travel time and cost of commuting to the transplant center

• Cost: Insurance coverage for the transplant center

• Support System: Availability of family and friends for help and support

• The Program: The medical and surgical team experience and the program’s experience with organ transplant.

UNOS is the United Network for Organ Sharing. UNOS oversees all organ transplants in the United States. UNOS manages the national transplant waiting list and has set forth guidelines and policies that ensures fairness for all patients waiting for organs, sets professional standards for quality patient care, provides accreditation to transplant programs and educates the public on the importance of organ donation.

Organ Procurement Organization are responsible for the recovery, preservation and transportation of the organs for transplant. As a community resource organ procurement organizations educate the public about the critical need for organ donation. Our local Organ Procurement Organization is Lifeline of Ohio (LOOP).

Heart Transplant is not available for everyone. There are specific criteria for eligibility that are published and supported by the Ohio Solid Organ Transplant Consortium (OSOTC). Our program is a member of OSOTC and information (without identifiers) is sent to the OSOTC for review prior to listing a patient. 

Once the evaluation is complete, the next step is listing. Listing is done through the national transplant list managed by the United Network for Organ Sharing (UNOS). UNOS works with our local procurement agency, Lifeline of Ohio, to recover organs.

Organs are distributed to the most critically ill patients. Once a person is listed for heart transplant, they are given a listing status based on the severity of heart failure. This status is determined by UNOS. UNOS ensures fair distribution of organs.

Status 1A often involves the critically ill. These patients are usually in the intensive care unit. They may require special medical equipment to support breathing and/or require certain high dose intravenous (IV) medication(s) to help the heart work better.

Status 1B patients require the same medications to help their heart work better but at lower doses. They do not need care in the intensive care unit but will be hospitalized on the step-down heart floor. Infants and children who can not gain weight appropriate for their age due to their heart problem can be listed as 1B.

Status 2 patients do not meet status 1A or 1B criteria. They are well enough to wait at home. They will be called at home or given a pager to carry and will be notified by the Transplant Coordinator when a new heart is available.

You may review current information regarding policy and legislation. This information  is routinely found on the UNOS web site www.unos.org and www.optn.transplant.hrsa.gov.

Yes. This is called “multiple listing” and this allows patients to be considered for organs that become available in other areas of the country. If you choose to be listed at another center you must be first evaluated by that particular center and then listed.

The overall cost of transplant can be very expensive. This cost can include evaluation and testing, ICU care, the transplant surgery and follow up care. In addition there may be loss of wages if you miss work. Very few patients can pay for all of the cost of transplant. Many of the costs are covered by insurance. Your transplant team here at Nationwide Children's Hospital will help guide you to obtain adequate coverage and a financial strategy to cover other expenses.

Patients added to the UNOS waitlist may wait days or years. The factors that affect wait time includes patient listing status, how ill the recipient is, and the availability of persons who donate organs.

When the appropriate donor heart is found, we will begin the process of preparing for the surgery of heart transplant. This surgery is very similar to any other type of open heart surgery. The average length of surgery is approximately 6-8 hours. You may wait with your family and friends in the surgical waiting room in the main hospital on the second floor. Here you will receive updates from the surgical team and the surgeon will meet you here once the surgery is complete. 

After the transplant operation, the hospital recovery time is variable but may be several weeks. After the heart transplant surgery the patient is cared for in the Cardiothoracic Intensive Care Unit (CTICU) for close monitoring. Once able, the patient will be moved to the cardiac step-down unit (H4A) with the next transition to be discharged to home.

Listing status determines if patients will wait for transplant in the hospital or at home. Typically, patients listed as Status 1A or 1B will wait for transplant in the Intensive Care Unit (ICU) or on the regular nursing floor of the hospital. If you live outside of Franklin County, up to four family members can stay at the Ronald McDonald House while a patient is in the hospital waiting for transplant. Patients listed as Status 2 may have the option of being at home while waiting for transplant.

Individual plans, benefits and coverage limits can vary a great deal from patient to patient.   It is important to do your own research and find out of your policy covers transplant and if you will be responsible for any costs.  Most insurance plans will cover some portion of the costs.   You may want to ask your insurance provider some of the following questions:

• Is transplant a covered benefit?

• Is a heart transplant covered by my health plan?

• Is there is a life-time maximum amount of money my plan will allow for transplant? What is it?

• How are prescription medications covered?

• Does the insurance plan cover medicine directly or is medication subcontracted to a "Pharmacy Benefits Manager"?

• Is the cost of medications included in the lifetime maximum amount of coverage

• Can you go to any transplant program or does your insurance limit you to only specific, designated hospitals?

• Will your policy cover the transplant at Nationwide Children's Hospital?

• Do you have an insurance case manager?

• What is his/her name and number?

Supplemental Security Income or SSI pays monthly benefits to people who are disabled, blind, or age 65 or older with limited income and resources. The Social Security Administration manages this program. Blind or disabled children, as well as adults, can get SSI benefits. If a family is over the income limits to receive cash benefits, patients may still be eligible for Medicaid for the Disabled. Medicaid for the Disabled can be used as a primary insurance or as a secondary insurance to cover co-pays and other costs.